Tales from the sick bed

Over the last several years, writing has become an important and rewarding outlet for me.  It has taken an especially important place in my life due to the fact that for the last 15 years, I have been living with and trying to effectively manage a chronic illness.  I'd like to share some of the ways writing has enriched my life and helped me to compensate for some of the losses and limitations I experience, in the hopes that I might encourage some of my fellow members of the constantly sick club to take up the metaphorical pen.

Creative and intellectual fulfillment

I have a degree in chemistry.  I was a straight-A student.  Lupus makes it impossible for me to work a full time job without becoming dangerously and constantly ill. Many people with chronic conditions are in the same boat, and it can deal a terrible blow to one's self-esteem.  Writing, whether for publication or simply for oneself, can provide a sense of accomplishment that can make the difference between contentment and despair.  Sharing your writing can make an impact on the world around you and provide you with a new sense of purpose.  Even if you only reach a few people, those few people have richer, happier lives because of you and your work.  Moreover, many of us experience the "brain fog" common to the chronically ill.  Mental deterioration is especially common if your disease is neurological in nature.  Writing or other creative outlets can help keep the brain firing on all cylinders.

Flexible hours and work environment

Writers don't have a fixed schedule.  The work can be done any time of day and in almost any location.  You can write in bed.  You can do research in your doctor's waiting room.  You can brainstorm with an IV needle in one arm and a blood pressure cuff on the other.  You can set your own realistic deadlines, keeping in mind your strengths and your limitations.  Chronically ill people hate the perception that we are unreliable because we often have to cancel plans or make adjustments to schedules in order to manage our symptoms.  At least with writing, or other artistic pursuits, we don't have to worry so much about letting anyone down or pushing ourselves so hard that we pay for it later.

Escaping the house with your imagination

Being sick all the time can be incredibly boring.  Being stuck at home can be depressing.  Limitations posed by your condition can be infuriating.  But your characters can do everything you wish you could do and go anywhere you dream of going.  I will never be able to sunbathe on a beach, and I'm unlikely to run a marathon, but my mind has no such limitations.  Daydreaming is fun and stress reducing, and as a writer, you get to call it work.  

Easing loneliness

Isolation can be one of the most damaging aspects of chronic ailments.  Sharing your writing with your friends and family, or with the online world at large, can help you make connections.  The internet makes it easier to find people with whom you can share your thoughts as well as your art.  You don't have to write a novel.  You can share a poem or a short story.  You can blog about your favorite show, or book, or sports team, or hobby. You can write about the political or social issues of the day and discuss your views with the like-minded and not so like-minded.  It can be terrifying to put your work out into the world, just as it is scary to go to a party with a bunch of people you don't yet know.  I try to tell myself that nothing worth having comes without risk.

Trying to practice what I preach, my new adult paranormal fantasy novel She Dies at the End is now available fon Amazon Kindle.

#BlackLivesMatter on the First Day of Kindergarten

One day he comes into the kitchen and tells you that the other kids wouldn't let him play their game and told him it was because he is the wrong color.  He is five years old.  And you think, Here we go.  Even before kindergarten, it begins.

All mothers are nervous before the start of Kindergarten.  I know this.  We are all concerned about mean teachers and mean children.  We fret that they won't eat their lunch or will have trouble making friends or will struggle with homework.  We are anxious that school will kill their curiosity and enthusiasm about learning.

But mothers of Black sons, and other sons of color, have extra worries you may never have considered.  Will he be excluded from games because of his race?  Will my child get blamed for something another child did because he is Black?  Will normal childhood behavior get him labeled as the bad kid when the same behavior in a white child would be tolerated?  Will he be expected to speak for his whole race whenever something about Black people comes up?  Will he have to sit through tone-deaf lesson plans and listen to teachers spout racist nonsense unaware of their own biases?  And these are just the threats to their hearts and souls.  There are also the threats to their bodies, from strangers who will make racist assumptions about them, perceive them as threats even before puberty.

The beginning of school is the start of their lives in an outside world where we cannot any longer protect them from those who will see them as stereotypes instead of as people.  Even before they can read or reliably tie their own shoes, Black children are more likely to be suspended or expelled than other students.  We know that Black boys are estimated to be much older than they actually are. That problem may have contributed to the murder by a police officer of a 12-year-old boy in Cleveland.  The world is simply more hostile for our sons, even the world of school, where they ought to be safe.

These are the realities that Black mothers have lived with forever.  The fact that white mothers of Black sons are starting to talk openly about such things shouldn't make people take it more seriously.  Sadly, perhaps it will, so here I am talking about it.

I am grateful that my son is extremely well-behaved in public and focused in preschool.  He is polite and friendly and endearing and happy and, for a few more years at least, very cute.  But I know that isn't enough to protect him.  Respectability is not enough to protect any of our sons, but we cling to it anyway, because it's better than nothing, because we know they'll have to work twice as hard as everyone else to get the respect they deserve. I am grateful to live in a part of the country that is no longer majority white, and in which overt racism is socially stigmatized.  I'm grateful that we chose a neighborhood in which the school is fairly diverse.  I'm grateful for our church community full of adults and older children of color who provide role models and advice when things happen.

I am also afraid.  I fear that I won't be there to defend him the first time someone calls him the N-word.  (I know we are lucky it hasn't happened yet.)  I fear that when he gets into an argument with a white student, it will automatically be the tall Black kid's fault.  I fear that my white privilege cannot protect him when he isn't holding my hand.  I fear that by the end of 5th grade he will be a scary Black man in the eyes of strangers.

But I am not paralyzed by my fear.  We prepare him as best we can.  We talk about racism.  We talk about what to do if someone calls him out of his name.  We talk about in the fact that he doesn't have to answer people's questions about his family if he doesn't want to, that he can decide how to tell his own story.  We talk about not wearing your hood up and how you talk to police, how you behave if you get pulled over.  We don't obsess over the dangers.  We don't teach him to be terrified of the whole world.  But we do speak honestly and openly about race and racism. He has already been excluded from games because of his color, after all. To deny that reality would damage him as much as the obnoxious children who excluded him, maybe more.

I am also not consumed by my fear.  I still talk with excitement with him about his new adventure.  I still stand grinning in the back-to-school section looking at lunch boxes.  I still get his wardrobe ready and hope for a good teacher and gossip with my mom friends about all the changes in store.  I still love that he loves his new backpack and insists on wearing it around the house.  But the worry is still in the back of my mind, even then.

Now, I know that some of you think I am borrowing trouble.  Some of you think this is a post-racial America, and racism is over, and talking about race makes me the real racist.  Some of you don't talk about race with your kids because you want them to be "colorblind." Refusing to discuss or acknowledge racism only allows it to perpetuate.  Perhaps if more white people would speak up, with their kids and with their friends, we wouldn't have to be so scared to see our sons growing older.

Racism isn't just hoods and burning crosses.  We are all products of a culture that teaches that white is best, and nobody grows up in a culture like that without being affected.  No power structure is immune from that influence, be it police department or church or school district or classroom.  So many people want to deny this reality, perhaps for fear of accepting blame. 

So we allow our world to continue to kill Black kids and then try to find a reason they had it coming.  He should have been more polite.  Why did she mouth off like that?  He shouldn't have run.  It's his parents' fault.  Look how trashy they are.  He should have gone straight home.  Never you mind that a white kid in the same situation would still be breathing.

And so mothers of Black sons are afraid sometimes, and we have to be brave, because that is the world into which we send our beloved sons on the first day of kindergarten: a world in which they are at the very bottom of the list of which lives matter.  

A.M. Manay is a writer and mother.  Her novel, She Dies at the End, is available on Amazon Kindle.  Follow her on twitter (@ammanay) or Facebook (facebook.com/ammanaywrites).

The Girlfriend's Guide for the New Lupus Patient

Getting diagnosed with a chronic illness can be overwhelming. Sometimes it can be a relief to have a name for what you're going through, especially if you've been suffering for a long time with no diagnosis or treatment. Even still, you are bombarded with information and decisions that need to be made, and it's a lot to handle. Here are some tips from someone over fifteen years down the road. The advice is specific to Lupus, but a lot of it would also apply to other chronic conditions or autoimmune disorders.

1) Find a doctor you trust.

Your rheumatologist (and his or her nurse) need to be good. You will hopefully be with her a long time. She needs to be someone with good judgment who takes your quality of life seriously. If your blood work looks okay but you feel like death, she needs to take that seriously. She should ideally have connections to other specialists you might need (dermatologist, nephrologist, perinatologist, etc.). She needs to be willing to get on the phone with your other doctors. She and her nurse need to be willing to battle the insurance company when they try to deny coverage for something you need. You need compassionate warriors. Don't accept less.

Obtaining the health care you need is infinitely easier, of course, if you have insurance, money, and reliable transportation. If you're lucky like me, thank your stars.  

If you are not so lucky, the programs meant to help those of us who don't have those advantages can be hard to access, but you must persevere. It isn't fair that you'll have to fight the bureaucracy, but your life depends on it. There are people who can help you, like disability attorneys and hospital social workers. Seek advice in Lupus groups from people who’ve successfully navigated it.

2) Stay out of the sun.

For real. If you are an outdoorsy person, and you wish to remain outdoorsy, you have to take a lot of precautions. It's not fair, but it's the truth. A large percentage of lupus patients get worse with UV exposure. That means hats. That means sunscreen every day, at least SPF 30. That means long sleeves. That mean minimizing your beach and pool time, buying bathing suits that cover you up, using umbrellas. It means maybe needing to wear gloves when you drive, or getting coatings on your windows. That mean no tanning bed ever, ever again. Ever. Like, you could die from that nonsense. That means take your vitamin D, 'cause you're sure as heck not making much yourself.  

The one good side to this is that you will look young for a long time. Your dermatologist will be super impressed, and you can giggle at everyone's crow's feet at your high school reunion.  I have not left the house by day without a hat on in 15 years. It shows.

3) Diet and supplements will help, but they aren't a cure.

Eating right can help your disease. It can definitely reduce inflammation. It can help you manage your weight, which will help your joints. It can help your energy. It may even help you reduce your medication intake. But the raw carrot diet is not going to stop your white blood cells from making auto-antibodies. You still need a doctor. You might still need medication. Don't pull a Steve Jobs and try to use your Google MD to try to cure a complex illness with veggies, especially if you have organ threatening disease or are pregnant.  

The most common supplements thought to be helpful for people like us are fish oil, turmeric, vitamin D, calcium, folic acid, and DHEA. Some of us take iron for anemia as well.  Ask your doctor before you do anything.

This leads us to . . .

4) Take your meds.

I know taking lots of medication is scary and a pain in the ass. But if you need it, you need it. Taking your meds can help prevent organ damage, even when you only have mild lupus, even when you're having no symptoms at all. If you're having side effects, tell your doctor. Don't just stop.

That being said . . .

5) Get your eyes checked.

If you are taking Plaquenil (aka hydroxycholoroquine), you need to be screened at least once a year for Plaquenil toxicity. This medication can do irreversible damage to your retina, so it's important to catch this side effect early. In the first 5 years of use, it is rare, but after 10+ years on it, your risk increases greatly. I never thought it would happen to me, but it year 17, we found signs of damage and had to discontinue the medication. Don't blow off your ophthalmology appointments!

6) Try to avoid the 'roids.

Look, if you have organ threatening disease, and your doc says steroids are all that's standing between you and dialysis, then take the damn prednisone. And if you're having a flare and need prednisone for a few weeks to tamp things down, go for it.

But if you have mild to moderate disease, and it's about dealing with pain and fatigue and quality of life on a long-term basis, try other stuff first. Injectables and intravenous or subcutaneous Benlysta sound scary, but they won't leech the strength from your bones and teeth like prednisone does. They won't turn off your adrenal glands like long-term prednisone does. They won't mess up your skin and your figure like long-term prednisone does.  

And they won't give you crippling withdrawal when you need stop taking them like prednisone does. It took me a year to get off of 5 mg of prednisone a day, and I was sicker than the Lupus ever made me.  

We have better options now. Talk to your doctor about possibly using them instead of prednisone.

7) Watch out for infections.

The number one killer of Lupus patients is infection, not Lupus. Our bodies don't fight germs well, and that plus immunosuppressive drugs equals lots of infections. Take them seriously so you don't wind up in the hospital. You think you might have a UTI? Call the doctor. Lingering cough? Call the doctor. Fever over 100? Call the doctor. Wound won't heal? Call the doctor. When in doubt? Call the doctor.

8) Exercise how you can, when you can.

Moderate exercise can help you with disease management as well as your mood. Things like recovery yoga or low impact workouts can be helpful. But there will be times you do not have the energy to spare, or times you are in too much pain. Don't beat yourself up over it. It does no good to compare yourself to perfectly healthy people. Do what you can and build up slowly. There are weeks I hit the gym three times. There are months I don't make it at all. That's just the reality.

9) Plan your pregnancies carefully.

If you are a woman, and most of us with Lupus are, you have to be careful choosing birth control with the help of your doctors. Your pregnancies will be high risk, even if you have mild disease. If you have a clotting disorder, you will need to be medicated for that or risk losing the baby. Pregnancy can result in organ damage even if you didn't previously have organ threatening disease. I'm not saying you can't be a mom. I'm saying you need to plan it carefully with your doctors.

In addition, you may need more help postpartum or post-adoption than a healthy person. Your partner needs to be on board with that reality. Mommy cannot do it all.

10) Learn to say no.

You have to learn to say no to things, and to plan recovery time for things you know will wear you out. Save your energy to the things that matter most. Your friends will understand, or they weren't real friends. You don't need to help people move. You don't need to babysit everyone's kids and run the church raffle. You don't need to party every weekend. It is okay to say no.

That notwithstanding . . .

11) You can still do things.

I was diagnosed right around college graduation. I spent my senior year in doctor's offices and blood labs. I still graduated. I got a Master's degree. I got married and moved to California. I taught high school in the inner city. I became a Presbyterian elder and a clerk of session. We bought our first house. We adopted a son. I just published my first novel (buy it!!!!), then four more. I went to Spain, India, Japan, and Singapore.  

My life did not end with my diagnosis. Yours won't, either.  

You will have good days and bad days. You may have months you need a cane every day and years you don't touch it. You may go into remission. You may find the perfect medication for you. 

You can survive Lupus. You can even thrive with it. Your life is not over, and you are not alone.

A.M. Manay is a writer, mom through adoption, and Lupus survivor.  Follow her on Pinterest or Facebook.

If you like a fun read with vampires, fairies, werewolves, romance, and mortal danger, check out her novel, She Dies at the End, available on Amazon Kindle. If high fantasy is more your bag, try Hexborn.